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by Patricia Degan, Director of Marketing & Public Relations

Who are the Pioneers in home-based comfort care?

Mon, Nov 3rd 2014 03:00 pm
Niagara Hospice volunteer Barbara Reed visits with Niagara Hospice patient Martha Lavocat who passed away in August.
Niagara Hospice volunteer Barbara Reed visits with Niagara Hospice patient Martha Lavocat who passed away in August.

You may have heard a lot lately about palliative care. Palliative care is defined by the World Health Organization as "the active total care of patients at a time when their disease is no longer responsive to curative treatment and when control of pain, of other symptoms...is paramount." Summed up, it is the coordinated delivery of services to relieve an individual's symptoms and bring them comfort. Palliative care is often provided in a hospital but can also be provided in the home.

The coordinated delivery of professional services to people in the home was modernized in England during the 1960's and came to the States in the 1970's. Since then, services have grown to include nursing, home health aides, social work, spiritual care and even bereavement counseling for loved ones. You may ask: "Does every home care provider do all that?" Well, no.

But there is a professional provider that does all that and even more. Additional services include massage and music therapies that have been found to help reduce levels of anxiety and pain, as well as relieve stress and aid relaxation; physicians, clinical pharmacists, homemakers, allied therapists (occupational, respiratory, and physical), nutrition consultants and medical equipment specialists help round out the team that provides individualized care to each person based on their specific needs. To many Americans, the ability to receive a variety of services in their own home can make all the difference in their quality of life and desire to live. More on that in a minute...

Have you guessed who provides such a variety of services with one phone call? Hopefully, you've been held in suspense - but this is no thriller so don't let the next word scare you: Hospice. Yes, hospice care has been around since 1974 in the States. Dame Cecily Saunders started the modern hospice movement in the 1960's by establishing St. Christopher's Hospice near London, England. She said: "You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die." Unfortunately, some people are too afraid of the word to make the choice to live a quality life, while there is still life left.

Considered to be the gold standard for high-quality, compassionate care for people with a life-limiting illness, hospice care is too often overlooked or simply not thought of when considering care options. And, contrary to popular belief, choosing hospice does not mean giving up. It does not mean losing hope, or that death will come faster. If you dissect the word, there really is HOPE in HOsPicE. Hope for comfort when a cure is no longer feasible; hope that a secure, familiar care setting can be enjoyed; hope for personal dignity and freedom from unwanted procedures. Additionally, hospice gives hope that the family will be nurtured and supported, even after the death of their loved one. Several studies, including one in 2007 by Duke University revealed that people with a terminal illness who choose hospice care live longer and with better quality than those who do not. Does quality of life effect desire to live? You decide.

After being told their father had about three months to live, the Mullane family of Lockport called Niagara Hospice. Paul Mullane said, "We got almost a year with Hospice. In that time we had another Christmas, two more grandchildren were born... Once we made that decision to call Niagara Hospice, my dad's life got so much better."

November is National Hospice and Palliative Care Month, providing an opportunity to learn about end-of-life care choices. Unfortunately, too many families are denied the benefit of hospice care, or wait too long to accept the many supports the hospice team provides. Too many patients accept hospice only in their final days or even hours of life, leaving families wishing they had known about hospice care sooner. Many patients die without ever being offered the tangible end-of-life support that hospice care provides. They may instead struggle with untreated pain and with the side-effects of by-now futile curative medical treatments. They suffer all this, in addition to watching their families struggle to cope with the escalating demands of care.

Hospice professionals are the pioneers and specialists in home-based comfort care. With hospice care, the wishes of the patient and family are paramount. Services include expert medical care, pain management, and emotional and spiritual support. The majority of hospice patients are cared for at home but care is also provided in nursing homes, assisted living facilities, adult homes, hospitals and hospice in-patient facilities.

Hospice is a Medicare benefit, incurring no cost to the patient and millions of dollars in savings to the Medicare system each year. Medicaid, most private insurers and HMO's also have a hospice benefit so cost of care should never be a barrier. Utilizing hospice services can also reduce hospitalizations and trips to the ER, contributing to savings and improved quality of life for patients who wish to remain at home - surrounded by family and familiar surroundings, sights and sounds.

Hospice programs across the nation support earlier family discussions of care options once a person receives a serious diagnosis. These discussions should then be continued with the physician, rather than waiting for the physician to ask how you want to be treated should cure options be exhausted. One of the best ways to make sure you and your loved ones benefit fully from hospice is to talk about it before you need it.

If you or someone you love is struggling to cope with a serious illness, call your local hospice provider. In Niagara County, call Niagara Hospice at 439-4417. More information can also be found at www.NiagaraHospice.org.


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